posted
Hi, I got Lyme while working at summer camp and so far my treatment seems to be covered by workers comp (sadly, not that of my two kids who also got Lyme and Babesia while at camp). The lawyer is asking me what I can expect to see in terms of long-term disability from my having Lyme. So far I have been on antibiotics for 5 months and am finally doing really well (though I was completely out of commission for the first few months). I would love to hear from others a scary laundry list of what could go wrong or how having had Lyme (and possibly some co-infections...we do not know) will negatively impact my life. I am assuming that will include things like potential organ damage or chance of relapse or needing to always watch my immune system, but I imagine there is a ton on the list that I would never imagine. It could be something that COULD happen in a year or two or even way down the road. Do not worry about scaring me...I (and they) need to know... Please email me directly at [email protected]. Thanks, Beth
Posts: 22 | From Los Angeles | Registered: Nov 2008
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Hi, My feeling by now, so many yrs. become stealth. Let use we all carry/cancer cell(100 types+). Staff strep we all carry. All these need trigger,major stress-or illness,car accidents. Anywhere can sneak in being already there. Why does someone get cancer of Hodgkin's, many not.Still real illness, takes yrs. sometimes to DX most cancers. O r why some meet up with strep, hosp. pts. get, NOT all only small part.
SO, here you are as kid, bit by something, that carries Lyme yrs. being stealth now. For me may got equine Lyme, big horse person, gardeners, a walk in woods. I remember getting unusual rash as kid. Mom said Poison Ivy. I was not allergic to it or NO where need it. Most cancer pts. have NO idea why breast over prostate. OK.,lol/little gender joke from Lymie brain. Sure you got the message :grouphug:Huggggsss to all in need.....Kerry
Posts: 746 | From Clearwater/fl/Pinellas | Registered: Jun 2003
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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Rami,
Many here have trouble reading posts of long sentences. I'll break up the spacing so that you can get more readers, more replies:
-- original post:
Hi,
I got Lyme while working at summer camp and so far my treatment seems to be covered by workers comp (sadly, not that of my two kids who also got Lyme and Babesia while at camp).
The lawyer is asking me what I can expect to see in terms of long-term disability from my having Lyme.
So far I have been on antibiotics for 5 months and am finally doing really well (though I was completely out of commission for the first few months).
I would love to hear from others a scary laundry list of what could go wrong or how having had Lyme (and possibly some co-infections...we do not know) will negatively impact my life.
I am assuming that will include things like potential organ damage or chance of relapse or needing to always watch my immune system, but I imagine there is a ton on the list that I would never imagine.
It could be something that COULD happen in a year or two or even way down the road. Do not worry about scaring me...I (and they) need to know...
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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I prefer not to e-mail. By answering here, others can benefit from the information.
A scary laundry list of what could go wrong may not necessary if you got treatment early and aggressively - and you are taking excellent care of yourself (you don't smoke or drink alcohol and get good rest).
I've never heard of a disability case looking ahead to what COULD go wrong or get worse. Usually, it's what you can or cannot do NOW - or in the near future.
My concern is that if you or your atty. present a long term "scare" list you will be dismissed - partly due to the IDSA not believing in chronic lyme - and also you may be seen as a hypochrondriac. MANY lyme patients are given this label. You have to be extra careful NOT to appear or sound like a "worrying" type. Remember that the IDSA discounts this.
You would need EXPERT research to present and know that it will be discounted at every step by the (non) "research" of the IDSA. Personally, I'd not waste time projecting, mostly because projecting, in terms of likely disability, is not even done for cancer patients until they reach hospice level.
Yes, the outlook can be scary and it can become reality. I just don't want you to think it has to be this way and also alert you to the fight ahead in this area. Fighting does not make a good environment for healing so however you proceed, I hope you have what you need.
I will post a couple articles below, though, that do explain the long term outlook for those under-treated or not treated in time.
You could do very well with treatment. You will have to be on guard for the rest of your life, but having an eye open to early symptoms and getting prompt treatment if such occur can have a far better outcome than not getting treatment.
Most people who have gotten the scary laundry list did not get proper treatment (on time or enough meds or support measures). And, yes, even with good treatment, some do have a terrible time of it and the treatment may not work.
But you won't know until you have gotten further along in your treatment course. There is no way to test lyme along the way as in other infections. There is no "cure" for lyme, true. Still, many get better and the ILADS researchers are working to learn more each day.
As for how to proceed with a disability request, much depends on the answers to some of these questions:
1. How long between the time of infection to the time of treatment?
2. Are you being treated by an ILADS-educated LLMD? Is s/he a member of ILADS? ( www.ilads.org )
3. What kind of treatment? Is it is single drug or a combination treatment? Which protocol? (i.e. "ILADS" or "Dr. Burrascano's")
4. What is the length of outlined treatment by your doctor?
- And what progression of medicines are planned?
5. Were you assessed / tested for coinfections such as babesia, ehrlichia, bartonella, others? Some ticks carry multiple infections. (Also being assessed for Cpn, mycoplasma and HHV-6 is important.)
6. How many other patients has your doctor treated? Is your doctor treating ONLY lyme patients or one here or there?
7. Of the symptoms, were yours at the start of treatment more joint related or neurological - or both?
8. Are you taking neurological, endocrine and liver support measures? All are essential to treatment success.
9. Are you taking probiotics to prevent candida &/or Florastor ( www.florastor.com ) to help prevent c. diff?
10. Have you been tested for heavy metals? It's very common for lyme patients to have elevated levels and this MUST be addressed or lyme may never get under control.
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[ 30. December 2008, 01:14 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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While you may see good success from treatment (although that could take a year or more, depending upon your case), this sums it up - for patients who do NOT get proper treatment in time:
CONTROVERSY CONTINUES TO FUEL THE "LYME WAR" - By Virginia Savely, RN, FNP-C
As two medical societies battle over its diagnosis and treatment, Lyme disease remains a frequently missed illness. Here is how to spot and treat it.
Excerpts:
" . . .To treat Lyme disease for a comparable number of life cycles, treatment would need to last 30 weeks. . . ."
`` . . .Patients with Lyme disease almost always have negative results on standard blood screening tests and have no remarkable findings on physical exam, so they are frequently referred to mental-health professionals for evaluation.
"...If all cases were detected and treated in the early stages of Lyme disease, the debate over the diagnosis and treatment of late-stage disease would not be an issue, and devastating rheumatologic, neurologic, and cardiac complications could be avoided..."
. . . * Clinicians do not realize that the CDC has gone on record as saying the commercial Lyme tests are designed for epidemiologic rather than diagnostic purposes, and a diagnosis should be based on clinical presentation rather than serologic results.
- Full article at link above, containing MUCH more detailed information.
May 2008 Volume 39 Number 5 LABMEDICINE www.labmedicine.com - American Society for Clinical Pathology
CHRONIC BACTERIAL AND VIRAL INFECTIONS IN NEURODEGENERATIVE AND NEUROBEHAVIORAL DISEASES
- by Garth Nicolson, Ph.D.
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About Cpn: (As with lyme and other TBD - tick-borne diseases, most doctors are not very educated about Cpn. A great site is: www.cpnhelp.org )
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[ 30. December 2008, 12:55 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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You always have to take into account the time between infection and treatment, the total number of infections and individual patient cases. Still, here's a thread that details steps others have gone through to find treatment success:
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